For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Proud..........;;you were on Arimidex right......................if I am right, my MO said the SE's from Arimidex take longer to get rid of, and some never do..............
Now my feet startd to hurt agin (after being off Letrozole and doing good)................within 3 days of starting Arimidex...........then when I stopped after 3 weeks......my feet were still hurting 2 weeks later..................now your 6 months..........remember I was only on it 3 weeks.........how long did you stay on it..............that might be a factor in still having the pain now.......it might take longer......
I still do not understand how it is my SEs from Letrozole eased up almost immediately which was 2 days......not all, but many........yet Arimidex is the same class, and compound (an AI) as Letrozole, but the SE's stay with you so much longer after stopping...............
I should call Astra Zeneca and ask them.........maybe they could explain it.........hmmmmm......looks like I'm on a mission here....................I really need a life..............LOL........
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hmmm, wrote a post and it evaporated,
Ducky, I was on femara for the first 18 mo, then went to aromasin and that became generic at about another year or so. I had switched as I had leg pains that I blamed on the femara, turned out to be caused by my statin at the time, when someone suggested stopping the statin the pain went away overnight. I do now take a dif statin but alternate nights at the approval of my cardiologist. I ended the full 5 years of AL last January and my MO said if my aches did not leave after ending the AL, then it was not caused by the AL. so who knows?
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Proud.............now my MO said some people the SE's never go away........so who knows......I don't think they do either.
Not sure if I told you we write so many posts..............but I take 200mg. of coq10 every day............I was told to do that by a nutritionist, plus switched to Pravastatin (Provachol) which is a very old proven drug........
Coq10 is also very good for you because as we get older we lose it and do not make it up as regularly as when younger.
You might want to give it a try....its not cheap, well let me correct that...........the capsules are cheaper.........the soft gels..........are more expensive, but watch for sales.....like buy one get one........
I did see a big difference when i started taking a higher dose........my multi had coq10, but only 50mg............the nutritionist said I needed at least 200 if I was having aches and pains, especially leg pain..............
Glad your done the AI.............hope your aches go away,.........but take your statin if your Doc told you to, I didn't and paid the price 2 years later......
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after a short break from statin, I am back on it, hate the thing. Taking generic Lipitor so maybe on next visit I should ask about one of the old statins?
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My Cardio tried Liprator........I could 'n'ot tolerate the aches........
Then he gave me Pravastatin.............my Pharmacist said "its about time someone trusted the older proven drugs...............and it worked.......but I also believe the Coq10 helped..............
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sounds like something I should ask about, thanks
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Peggy - you must be busy. It's unusual to not see you here.
Today is day 5 since I increased from 1/4 to 1/2 dose. No itchy, burning scalp BUT I could not walk today - felt like an invalid. Lower back and leg pain (I have arthritis from scoliosis) ... even my shins hurt. Aleve did not help. I need to ask for something different but will go back to 1/4 for now. I really did want this to work for me.
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Aw, Jilly, that's rotten. I'm sorry. No scalp issues but you can't move. Doesn't seem to be a good trade-off. I can't remember, are you taking the Teva or brand name? There are other AIs, too, and one of them might be perfect. Some women have said that the SEs lessen or go away after awhile. Of course, some women never have them go away. I know you want this to work. I don't doubt your determination at all. Talk to your MO and see what he says. Maybe he will have an idea.
I wasn't around much today because I was feeling rather lazy and sleepy. Kept dozing off in the middle of my book. Rainy and chilly here. Must have dulled the brain. But I've been following everything that has been posted.
Keep experimenting, Jilly. I really believe you'll find the perfect dose of the perfect AI.
HUGS!
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Jilly.........so did I........more then anything I wanted this to work...
When i started Letrozole and had no SE's f'or 3 months I thought .......Yes, there is a God........
Was not to be for me.......gradually one after one the came............finally after the neuropathy I could take no more......not being able to walk was the worst thing.........being off balance and then adding not being able to walk was a disaster and an accident waiting to happen...............
Am I scared.....damn right..........do I think I did the right thing...........anothr big yes................but no one can say I didn't give it my all.....
31/2 years of pure hell........I just hope it was long enough.............
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Good luck with your fraction's ladies. My MO said the same thing---you either take it or you don't at 1mg. When my cholesterol shot up, I came off it for 45 days, we took my cholesterol--NORMAL. He put me on Femara and after 4 pills, I thought I was dying. Plunked down a copay to look across the desk at him and say NO MORE. FOR ME, it took a lot longer for those 4 Letrazole/Femara's to clear my system than it did the 9 months of Arimidex......So we are all different. And my MO insisted I have a 2 week wait between going off the Letrazole and back on the Arimidex. I have zero background in anything medical, but as a compassionate person, I would certainly support a patient who did not feel like they could tolerate a full dose initially, and I would t ry everything in my trick bag that might work for them first, but I can't see any competent doc abandoning a patient. That was a question I asked my MO before I ever had my surgery----if I say no to a treatment you want me to do, will you still be my doctor...I knew I wasn't trying chemo...with liablililty what it is today, I don't know if I would be asked to sign something or not if I went against his wishes. I just know I trust his guidance, but have to do my own due diligence and the #1 Rule is always do what you think is right so you have no regrets.......
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Red, you're so right. We each have to do what is right for US! And once we make that decision, don't look back. You can't second guess yourself.
Are you back on Arimidex now? Is that what sent your cholesterol up? Have you figured out how to handle that? Nothing is easy, is it?
HUGS!
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Peg,
Went in for my herceptin today and my MO talked to me about Arimidex. I have a prescription we're doing a baseline hormone test before I start but he told me to my great relief that I was very low risk and that if I couldn't handle it or had a bad quality of life he would stop it. He told me that the thing that was most important part for me since I'm strongly HER2+ is the Herceptin. I asked for Teva as you recommended and I'm feeling confident I'll do ok fingers crossed
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Anyone had trouble with double vision on an AI or Tamoxifen? I've had problems that have just been diagnosed as "decompensated phoria" and may be lookig at eye surgery this summer (need to get new contacts and glasses first and be rechecked). I didn't connect it with my cancer treatment but tonight completed some online surveys for the "Health of Women" studies through Dr. Susan Love's Foundation and they included double vision on the list of problems for both Tamoxifen and Arimidex. Got me to thinking that I should check it out. Anyone have experience with this?
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Suladog, sounds like you have a great MO and that he really listens to you. That's so important. Very good that you asked for the Teva brand since there seem to be fewer SEs than the other manufacturers'. I'm sure you'll do just fine on Arimidex. Think positive! From what I understand, Herceptin is a wonder drug for HER2+ ladies. Do you tolerate it well? Thank you for the update!
HUGS!
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I would never discourage anyone from trying the AI's.......I tried 2......and if they told me another one might work I would try that too,........
Tamox was suggested even though I am years past menopause......I have had deep vein thrombosis 6 tmes......immediately my MO said "ok, that one is out"..........I have not tried Aromosin.
She wanted me try Faslodex which needed approval since I am early stage and not stage IV, and that is what that was approved for......and that one is totally different......a different class of drug.......
My MO's feeling was I probably can't take AI's without a problem.....I found Arimidex to be much harder on the body then Letrozole, and SE's have lingered longer from Arimidex then Letrozole.......its been 3 weeks off, and I sitll have some.........and they are not just mild, or tolerable....they are bad.......
As far as "what if's" go.....I made a decision......I stopped with the blesing of my MO......who sat across her desk from me and said "I completely undersand , what good is life if you can't live it"...............then I said to her........"I could go another 1 1/2 years and make my 5, but now "you all" are considering a 10 year timeline..........and answer a question for me................it is quite possible even after suffering for 5 years, I could still get a recurrence......"right"......she shook her head yes............My MO is very caring, very concered, and has worked with me from day 1..........She is from The Fox Chase Cancer Center in Phila..........not sure if anyone has heard of it, but is one of the top cancer centers in the nation..........
I would love to see a thread on BCO asking all our ladies how many of you completed the 5 years on AI's.............How many of you stopped because of SE's...............How many of you had no SE's at all................... That would be a great one for the Moderators to do...................
I don't take stopping AI's lightly.........I am damn concerned about stopping................and when I am sitting alone and the TV is boring, and I don't feel like reading, and my thoughts begin to wander.............will I reflect back tto "I hope I did the right thing"...........yes I will...............Its cancer that could return for me..........not an ingrown tonail..............................but I made a choice................
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Ducky, did you consider trying Aromasin? I gather it is different from Arimidex and Femara while still in the same class. It's a terrible decision but, in your case, it sure seems to be the best one.
HUGS!
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Ducky, so sorry that you are having problems on the dang PILL.....I did complete my 5 years on AL, when I was coming up to the end, I had asked my onco if I would be able to stop at 5 years and she said yes. I confess that I had not had a conversation about side effects but she felt that since I was DCIS only, the 5 years was enough.
Course I wonder how much of the pains I have on my feet and by persistant back pain, are they related to the AL?
Got to say, that first week after ended the AL. dang but it was like going off a round of precnesone. I was ready to hit the roof and it was a good thing I was retired as else I would have bitten the heads off of my clients!
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I have no problem with taking these pills for the rest of my life - without debilitating side effects.
Peggy - I switched to Teva when I had the scalp issues. Mild scalp issues with Teva that I can live with but not that awful pain. I could not leave the house. DH wanted to go to the store and suggested I use one of those scooters. Not happening.
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peg,
Funny thing is I never even suggested doing that, he just felt considering my numbers ect he doesn't want to treat me too much and damage anything g since I am early stage. So I've got no problems with doing the AI and in felt in his opinion and that of other drs in a lot of early stage stuff even 5 yrs might be too much they just don't have the data yet. So I have no problems starting on arimidex and hopefully no problem staying on it. I just liked finding out I am very low risk which after everything else was a relief
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peg,
Yes I am doing just fine on the herceptin , there is some nausea but not much otherwise AOk
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Jilly, hopefully going back to 1/4 pill will make the SEs go away!
Suladog, low risk is a very good thing! My MO has suggested that I may be on Arimidex for 10 years. We'll see after 5 what the current thinking is. So far I see no reason not to stay on it. Every MO's experience and recommendations seems to be different, doesn't it? Glad you're doing good on the Herceptin. I would guess nausea isn't too high a price to pay for peace of mind.
HUGS!!!
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My former MO told me from the get go 10 years. (Humana kicked his practice out of network). The current MO says 5. While it would be nice not to take it, I'm going to go for 10, if I can.
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spookie, sort of think I would go for the 10 with your diagnosis, best of luck
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How helpful of your insurer to kick your MO out. That would really tick me off. If you want to do 10 years, I'd do a bit of research, print it out and take it with me to an appointment where you discuss that. Guess that won't be necessary for awhile yet. Like you, I want to do 10 if I can.
HUGS!
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That too proud. He said if I could go 2-3 years NED, I had a pretty good chance. So far, 2 years+.
I can't type how I feel about Humana doing that. Fl Cancer Specalists are all over the state. And NC.
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Spookies,
yes, my MO said that he has patients he wants on it for 10 years, others 5. One of the female MOs suggested doing a hormone check before I start, just to see where I am at before anything goes in, I suggested it and she thought that would be a good thing to do, in general she was surprised she hadn't thought of it before but said she'd be doing that from now on as it's a good benchmark. Supposedly the less hormones already circulating the easier the SEs, or so they say. Guess I'll find out. And yes, if you want 10 years, I can't imagine them telling you no, especially if that's recommended for you. I'm always amazed as to how much we have to fight and argue for what we need, and grateful for every lucky break when someone listens to us!
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peg,
no, I can handle the nausea and hearing something good, after the last round with cancer 25 yrs ago when they gave me a poor prognosis, I'm thankful this time around it's a bit easier. I'll take anything I can get, since I wasn't expected to get this far.
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Suladog, I hear what you are saying. You are so right. I'm glad it's not as bad. And I'm awfully glad you're here, too. Pretty damn marvelous! HUGS!
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Sul...........I was 80 3 weeks ago.........my estrogen is almost non existent.........SE's of Femara, Letrozole, and the last one Arimidex were pure hell..............so I guess that theory of less hormones less SEs gets blown right out of the water............and I know other women my age on other threads I am on all the time just a tad younger then I am who have low to no estrogen, and they had the same problems...........bad SE's ...........some stopped, some no..........but many have stopped.
So again its the luck of the draw.........
Peg.......Aromasin is as bad as the others..........not gonna be a guinea pig for the 4th time........not worth it..........and the last thing I need is a steriod, plus I have Asthma, and a blood disorder...........so that counts me out of that one................
ASthama and blood disorders are contraindicated..........I have Factor 7.......a son with Factor 7, and a daughter with Factor 11.......
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Ducky, I think you've done everything possible. You deserve a good QOL. HUGS!!
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